Thursday, May 1, 2008

A few posts back, I told you I was beginning a research collaboration with the neuroscientists at Harvard’s Beth Israel Deaconess Medical Center. In the study, we are focusing magnetic energy into my brain (I am one of several volunteers) in hopes of inducing brain plasticity.

I am still gathering my thoughts on the TMS work, but I will say this . . . the results I have seen are mind-boggling. It’s like science fiction, but for real. I don’t want to say too much more until I have test results to back up my words. But stay tuned . . . I assure you, it will be worth the short wait.

As you wait, keep in mind that I am personally experiencing this. This is not a thirdhand interpretation. Right now, I’d like to quote a letter I recently sent to Dr. Alvaro Pascual-Leone, director of the TMS program, and Shirley Fecteau, PhD, who’s running the current investigation. This experience occurred right after a TMS session:

Dear Alvaro and Shirley,

Today, your TMS gave me back something I did not know I had lost. Suddenly, I can see music again. Let me explain. Over the past 20-some years, I thought music had lost some of its richness; some color, but I accepted that as the gradual decline of my ears with increased age. Kind of crummy, but there it is.

Tonight, driving home, I became bored and switched on my iPod. I've got it loaded with the music I loved best, back when I did music. Most of my songs are original live recordings, the real thing, errors, mistakes, and all. Not the polished stuff that comes out of the studio. I switched it on to Diana Ross, recorded live in Las Vegas. I listened absently for a few minutes, and suddenly realized something was different. I turned up the volume a bit. It took a moment for me to get it, and then it hit me right between the eyes.

I could see the music. Again.

I listened some more, and realized it was true . . . I could “see” the voices, the microphones, the costumes glittering in the light; I could see the backup singers, and I could pick out the instruments out one by one. I heard her hit a triangle, and I could see it in my mind, clear as day, held up by the mike as she rang it. I could hear the emotions in her voice, and I could sense happy and sad and excited and tired.

I saw her in my mind, standing by the stage with me 30 years ago as we watched the band. I could see the instruments and hear them play, individually or within the fabric of the song. I could reach into the songs, and hold the individual bits and pieces in my hand.

Even the little stuff . . . the wind chimes; the bells; and the noises on the stage. I saw them all, just as clear as day, like watching a video. I could hear the echo as the vocals kicked back off the rear walls of the arena and came back into the stage mikes. I could see the crowds below. It was alive, and it kept changing.

A minute later, I listened to Eddie Holman announce his song, Hey There Lonely Girl in a hall in New Jersey, and I could see him speak. I didn't see him, exactly, but I saw my friend Willard Cofield, a prominent black Baptist pastor, who embodies something of his voice and expression. I could hear and feel the joy in his expressions as he shouted into the mike at the end of the song, "thank you for 33 years, three sons, and six grandchildren!"

It felt just like being there, with all the power of the original performance.

As I listened to three black musicians talking between songs, I could see my friends – Bobby Hartsfield and Seabreeze, standing outside my shop by their Harleys, and I saw the same expressions on their faces that I heard from the guys on stage. It’s like I could see the feelings of the guys on stage and link it to the “closest match” in people I knew; in the faces of my friends. An old recording transposed into the setting of Springfield, Massachusetts, yesterday. But not the music. The facial expressions and feelings. Strange, but not strange.

I listened to McFadden & Whitehead sing a song they wrote for Marvin Gaye, and I realized I could pick out the individual keyboard instruments. I could see them in my mind, too, three stacked keyboards with a fourth – a piano – to the side I saw the Korg on top and an old Hammond B3 on the bottom. I could see the keyboard player walking one hand along the Korg and the other on the B3, and then I could switch and follow the bass guitar.

I could pull them out of the music just like being in the studio, when I’d put on the headphones and hit the monitor button on the console. When you’re in a recording studio, making a record, you record every instrument and voice on its own track, so you can control it. That’s what I could do in my mind – pull the individual voices and instruments out of the background. But I did it without electronics. I had a digital processing suite in my mind, 20 years before they were invented.

Words cannot express the richness of the material I could hear. I listened to Tavares come on stage. Tavares is a group of brothers; they played the Boston club circuit when I started out and then made it big when they recorded the soundtrack for Saturday Night Fever with the BeeGees. I could hear them passing the vocal parts back and forth as they opened Penny for Your Thoughts; I “heard” the subtext of the show. Now, that particular recording of Tavares turned to shit on the next song as the PA system picked up an arrhythmic "pop-pop" noise that was totally out of sync with the music.

Yesterday, that "pop" was so objectionable, I'd have skipped their song Heaven, but tonight I played it through. And I found I could lock onto each voice, and the instruments in back, one by one. And I could filter the pop right out with my mind. It was like I had a noise cancellation program running in my head.

These are not new abilities. Do you remember how I said I could see the music when I was young? This is what I saw and felt. It's faded away over the years, and I guess I didn't know it was gone. Until now. Experiencing its return is to say the least, stunning. Will it last? I guess time will tell.

That ability is what took me to the top of the world, making musical electronics, 30 years ago.

A few weeks ago, I said I thought I'd lost many of my old technical abilities as I developed new skills; new paths. You told me you suspected the old abilities I thought were lost were still there, dormant in my mind.

I've got some questions for you about vision as well. For a long time my daughter had a very hard time if someone had a mole on their face. If she was forced to eat at the table with someone with a mole, she would literally gag and go running.

My thought was she could see every repulsive crack and crevice. Perhaps the vibration of the whole thing? Do you have any experiences with acute vision?

In Look Me in the Eye (a favorite with both me and my Aspergian 13-year-old daughter, by the way), you wrote eloquently about the fact that while your social skills have increased, making life easier for you in many ways, some of your other abilities have ebbed somewhat. I have pondered this a lot. I wonder whether this treatment is a venue to your having *both* your extraordinary gifts, just as you experienced them in your youth, and your increased interpersonal skills? I don't know if I am expressing this clearly. Without even understanding this fully, my brain is already spinning with the possibilities for gifted people on the autism spectrum. I will be following your posts with great interest. And I greatly admire your courage in plunging into this endeavor!

Incredible, John!As a future neuroscientist and a sister of an asperger's boy, I'm very happy that this kind of researches are going well!By the way, I'm gonna start researching about this medical center right know.Mariana Rocha - Brazil

Incredible, John!As a future neuroscientist and a sister of an asperger's boy, I'm very happy that this kind of researches are going well!By the way, I'm gonna start researching about this medical center right know.Mariana Rocha - Brazil

Holy Merde...... John, did you know the doc who discovered LSD died this week? Interesting juxtaposition that the old drug methods might someday change entirely to what you're doing. Fascinating stuff. My God, what I wouldn't do for someone to be able to tweak my Bella's brain and allow her to speak. I know she can. It's inside her. I can see the words forming in her blue eyes.... Thank you, John.

I sincerely hope that this neurological research of the brain's plasticity will someday enable your beautiful Bella to speak. I have always been fascinated with the science of the mind and how it relates to design theory. This research that John is participating in is going to revolutionize the field of psychology and our understanding of autism. It has always been my spiritual belief that "the kingdom of heaven is within us". As Einstein hypothesized that we only use ten percent of our brain's power. I firmly believe that these neuroscientists are going to discover a way to open up these blocked neural pathways for Bella to speak. I imagine that all people have this innate mental structure that needs simply to be turned on. TMS may prove to be the stimulus. Because of evolution I contend that speech is an innate part of the architecture of the brain, even in those who are severely autistic. The implications of this research are so incredibly exciting, not only for autism but also for stroke victims, for people who suffer from depression, and moreover for all those who believe in the power and magic of the mind. I think that John’s participation in this study will make him someday be as famous as Pavlov’s dog…..Woof!

I read your book---my sister in law gave it to me to read because my oldest son (he is twelve) has Aspergers. Your book really encouraged me.

I remember when my son was five and about to go into kindergarten and my husband and I were worried he would never live a normal life because he could barely talk in clear sentences or answer "wh" questions. He did, however, know how to read and play the piano when he was two without being taught. The therapists said that he had a condition as well called hyperlexia.

I told my son a little over a year ago that he has Aspergers. I was checking out books on it from the library because I was forgetting what to expect from him (we homeschool). He saw the books and asked me point blank if he had it; he had looked a couple of them through. He said, "I thought so," and told me that he was relieved, that this explained everything to him. I almost wept when I saw how much it helped him to know!!

His kindergarten year I put him in school with therapy (it was very little therapy---forty minutes a week when his iep was over an hour) part time and then I homeschooled him full time. I also gave him additional therapy at home with materials the school system gave me. He made such progress that I pulled him out of school the next year and decided to school him myself the rest of the time. The therapists exclaimed that he was nearly up to par with his peers by the end of the year. Granted, he is socially strange and very geeky, but he is extremely intelligent and very pleasant.

What I remember the most about one of the things you wrote about was when you were talking about how therapists say, "he/she likes to be alone" when talking about Aspergian kids. When you said that you never really wanted to be alone, in fact, you just didn't know how to be a part, it struck me. That is my son. He has told me recently that his biggest fear in the world is to be alone. It actually made me cry to read the words you had written.

Sorry to bother you again, but I thought I would ask you this: Have you ever had any irrational fears? My son is ridiculously afraid of flying insects. Every summer it ruins my life, no joke. If you are interested in reading about him a little, look here: http://greencathedral.blogspot.com/2006/12/attack-of-killer-rock.html

To say the least, I am dreading this summer. If you have any advice, I would so love to hear it!

The brain is a marvelous work of wonder. I stand in awe that you have volunteered yours for TMS research. I wonder if I'll see the day when my kids will benefit from this treatment. They have frequently expressed frustration with their autism. My heart breaks for them, though I do see them enjoying themselves when they're in their own worlds.

I am sitting on the edge of my seat waiting to hear more. When will some preliminary results be out? This is exciting beyond words!And truly, hugs to you for participating in this breakthrough science!

You're still woofin' big fella. You woofed on 5/1 in the comments on your last post. I hope you never stop. (Although I have to admit that when you do it to me I always have a strange impulse to meow at you, especially when you do it in person.)

I will certainly keep posted to your blog and I want to personally thank you for participating in this research. What Kim said struck a chord with me, as my son Liberty is 6 and not speaking; yet I look back in thearpy notes and at two in OT he said 4 words. It's so inconsistent. I don't understand it, but I also can't find anyone who does. It drives me crazy because he is so close, he understands so much and even signs some, but still the speech just doesn't take off. Very heartbreaking for me when he is crying and cannot tell me what is wrong....anyway, thanks and I am going to be riveted to your site for more info on this incredible breakthrough.

I am thrilled for you that your "old ears" are back and I am intrigued to know if this effect has changed your day to day experiences. My two girls (both autistic) have sensory issues with noise and not being able to filter out background sounds or prioritise sound. Has this improved for you? Also, I have the same frustration as Kim in that my youngest can speak but won't. I know this because at odd times and in times of stress she will come out with a complete sentence! Do you feel this treatment could make an impact on this kind of aphasia?

Amanda, you talk about your child having noise problems and not being able to filter out the background.

My situation is sort of opposite that, in that I can lock onto a pattern in music and follow it to the exclusion of all else.

That, in a nutshell, is why I could stand loud music when so many with autism have trouble with noise.

I'll actually have a whole chapter about that in my next book.

You also ask if this TMS treatment could help less verbal kids . . . we certainly have hopes for that, but we need to evaluate the results on high-functioning people like me to form a strategy that could reach lower functioning people.

So I guess the answer is . . . everyone hopes so . . but we're still in the early stages.

The beauty of this is that any change comes from within, as opposed to coming from a pill, or a knife, or any other hard intervention.

John,I just bought Augusten's book, Possible Side Effects. Long story, but I thought I was buying his current book (I post about this on my blog today)

But if you see him, could you tell him this is one of the funniest books I've ever read? Love the scene with the potato chips. And the Inn saturated with dolls. He was too nice to the lady in the elevator. And him talking his friend into the full page spread for a personal ad....I could go on and on. Great read!

After reading your book today, I was a little sad that although you had gained better social skills, you had "lost" some of your unique talents. Now I'm glad to see that you have that particular musical ability back.

He focuses a lot on how music seems to reside in it's own circuitry in the brain, and interacts in such interesting ways with the rest of the brain. He has lots of stories about people who lose and/or regain musical abilities through trauma and injury, and how music can be a pathway to brain healing as well. I'm sure he'd be fascinated to hear about how this research is going.

hello, my name is Raquel, i'm 13 years old and i live in brazil... sorry about the gramatical errors, but i want a lot to tell you about your book. i've just finished to read 'look me in the eye' (I started on sunday). it's strange to see a photo of the author after read the book. i love the way you gave voice to your feelings, and i guess you're not (or was) so different of a "normal" person. look somebody in the eyes was difficult to me too when i was a child (or most child than now), but maybe it's because i was shy, and nowadays i am the person who i want to be, i guess. i read about 'look me in the eye' in a brazilian magazine, so i interest oneself in. once again, sorry about the gramaticals errors and about the confused comment. and congratulations for the victory :) see you later,Raquel.

I wish you would write a book about your experience with wilderness survival. In your book you talked about meeting the fellow that was living in the woods. This section was short but it was very intriguing to me, especially considering you were so young then.

We have a little boy who lives next door and my son likes to play with him. They get on well. He's a friendly kid.

He's what I used to call when I taught a directed creative, my own terminology, but to me it means he's extremely focused on creative endeavors, mostly centering on electronics and mechanics. He'll spend the day filming things, for instance, exploring every aspect of what the camera can do. After meeting you online and in person, and after your book, I mentioned to my husband: "You know, I bet___ has Aspergers." You should know, I'd never make this statement lightly, having been a teacher and a counselor. And of course I just mentioned my suspicion to my husband, no one else.

Guess who was just diagonosed with Aspergers.

But that's not all. His mom told me rather in the manner of "our boys play together and I'm telling you so you know what's wrong with my kid." She was pretty down about it, worried. I think they got the diagonosis recently. Anyway, I loaned her your book --with strict instructions to return it since you signed it. :)--and I was able to share some of the positive things you've done with your life. I reassured her that she was ahead of the game compared to decades past, and that her son probably had brilliant, unique talents and they should focus on helping him develop them. She's very afraid of depression and suicide for him, and I told her that if he finds something he loves to do it will give him something to live for despite his issues. I reassured her that Aspergians can have a wonderful, fulfilling life as much as anyone.

All of which, btw, I learned from you John.

She kind of smiled and said, "Well, it does explain his fascination with the water heater, and why he's so good at putting things together."

Would you ever consider either posting about your experiences as you changed with puberty? Perhaps too personal, I apologize if I am out of line. I don't know what to expect from my kids. Particularly my son. He's gotten more agressive, self injurious and frustrated. I don't know if he'll go way out there like the old days or not.